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FEELING VERY DOWN

Hi all.
I have just had my clinic appointment yesterday and was quite upset when my consultant said that she was just warning me, so that it didnt come as a shock, but there was a possibility that they may pull the plug on my treatment. I am on Tasigna (Nilotanib) and do NOT want to go back onto Glevec with all the intolerable side affects it gave me. I have been out of the loop over the past couple of months as to what was going on with NICE and havent signed on here for a while to keep up with the news so it was a bit of a shock. Just to make things worse, they lost the results from my last PCR test which I had done end of April and they gave me the result for the test I'd had done in January AGAIN insted. That result was in the wrong direction and put me back were I was a year ago so I had been eargerly waiting for the result of my last test to make sure I was back of track. I was fobbed of with "I will post it to you straight after clinic has finished and I will even call you this afternoon to let you know that its in the post". Well there was no phone call yesterday and no results in the post today so I am a very unhappy bunny. I am seriously considering transfering to Hammersmith but dont know if it would be a good move or not with regard to continuing to get the Tasigna prescription. Not entirely sure what to do to be pro-active in ensuring my presciption is continued.
Ive finished winging now.
Sorry
Apryl

Hi Apryl, I would be fuming that they have lost your pcr results. I would be straight on the phone on Monday.
My understanding with NICE is that if you are already receiving either dasatinib or nilotinib you are able to continue with it as long as your consultant feels it is working for you. I hope this reasurres you a bit.
You could ask for shared care, this is what i have done, so am treated at my local hospital but also travel to the Hammersmith. In fact it has mostly been at the Hammersmith recently. As you know it is a centre of excellence for treating CML! You will have the best of both worlds with shared care.
Wishing you all the best,
Ali

Apryl, as long as you respond to therapy (in this case nilotinib) you should be guaranteed continuation no matter what the outcome with NICE is.
However, I would encourage you to change your care to either HH or some other centre of excellence. As Ali has already said- one way is to ask for shared care.
Best wishes,
Sandy

Thanks for your replies Ali & Sandy
I was not aware that you could have joint care, its certainly something I will look into.
I must admit, I did feel very short changed after my last appointment. I'm sure my consultant is probably very good but she's running a general clinic, not just for leukaemia, and it was heaving on my last visit. She doesnt have the greatest bedside manner at the best of times but when she's really bussy she can be qute abrupt and I feel that she doesnt really have time for me. There are a lot of very elderly people at the clinic and I sometimes feel that I get the dotty old dear treatment as well (the less I tell you the better your going to feel school of medicine). When my PCR results finally went below 0.1 she said that she had been quite worried as it had taken so long and she thought I was never going to get there (she then told me the significance of this number which she had not told me before). I asked her why she had not told me about her concerns and she just said "well I wouldn't would I". I dont know about you but I like people to be upfront and staight with me, so if she had concernes I would like to have been told about it, so i now have a loss of faith. I feel that if my life is in their hands I need to be able to trust them 100% and I cant say that I do.
Do you have any advice on how I would go about getting joint care with Hammershith.

Thanks
Apryl

Dear Apryl

My son is under the sole care of the Hammersmith which is his choice. He got there simply by making his wishes clear to his GP who wrote to Professor Applerley requesting it. Give it a week for the referral letter to get there then ring up to see if it got there ok. I think I also requested an appointment there and then. You still have to be prepared for a wait in clinic but I always think the doctors are spending enough time with each patient however long that is. Just take a book and chill out with a cuppa. As a parent I always feel that my sons best interest and care is at the heart of it. They make sure he's fully aware of what's happening and why they might want to do particular tests. He also gets a printout of his test results on every visit so that he can see the trend not just one result in isolation. Nothing is hidden and no question too trivial. Don't feel you're making a fuss. Be strong and good luck

Sarah

Hi Apryl,
I asked my consultant at my local hospital to refer me to HH. I think its polite to do it this way as your consultant has been treating you & can also pass on all your patient notes. Also, as the refering consultant she will be kept informed of your progress. It shouldnt take long. Just remember IF she were to be difficult over this that it is your right to have shared care. It seems that you have been kept in the dark regarding your cml, as patiens its much better to be informed. As one consultant said to me, it helps him if his patients know whats going on! We can also remind them if they forget something!!!
All the best
Ali